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When you're at risk for Huntington's disease, deciding whether or not to undergo genetic testing is one of the most personal and life-changing decisions you may ever face. But what happens after you get your results? On this episode of Help 4 HD Live, I'm joined by a special guest, "Jules," who is sharing her genetic testing journey while choosing to remain anonymous. For years, Jules wrestled with the decision of whether or not to test. When would she be ready? Did she really want to know? And how would knowing change her life? Eventually, she reached a point where she felt ready to take that step. Jules ultimately tested negative for Huntington's disease. But receiving a negative result doesn't necessarily mean the emotional journey ends there. We talk about what led her to finally pursue testing, the emotions and challenges she experienced along the way, and what life has looked like since learning her results. Because genetic testing isn't just about getting an answer. It's about everything that comes before it, everything that follows, and learning how to navigate life on the other side of uncertainty. Whether you've tested positive, tested negative, decided not to test, or are still trying to figure out what's right for you, this is a conversation worth hearing. 💙 There is no right or wrong decision when it comes to genetic testing. There is only the decision that's right for YOU. 🎙️ Join us for an honest, personal conversation about genetic testing, identity, uncertainty, and life after the results. #Help4HDLive #HuntingtonsDisease #GeneticTesting #LifeAfterTesting #HDCommunity #HDAwareness

In this episode of Help 4 HD Live, host Katie Jackson sits down with Wes, a certified genetic counselor and director of HD Genetics, to explore the complexities of genetic testing for Huntington’s disease. Now in its fourth year, HD Genetics provides remote genetic counseling and testing services for the HD community, supporting families as they navigate difficult decisions around predictive genetic testing. The conversation covers the personal journey of deciding when—or if—to get tested, the emotional and practical implications of positive, negative, or ambiguous results, and the importance of individualized support. Wes explains the different testing methods available, their accuracy, and what test outcomes mean for individuals and their families. The episode also delves into common misconceptions, the role of genetic counseling in managing expectations, and the significance of timing in the decision-making process. Whether you’re considering genetic testing, supporting a loved one, or simply want to better understand Huntington’s disease, this episode offers compassionate guidance and expert insights into one of the most personal choices facing the HD community.

To read/Print the safety planning chapter of the Help 4 HD Toolkit, click here: Help4HD Database

Please visit the Help 4 HD database to see/print the HD Tool Kit end-of-life chapter here: Help4HD Database

Nancy and Alice are sisters, authors, scholars, and longtime members of the Huntington’s disease community. Their mother, Leonore Wexler, was diagnosed with Huntington’s disease in the late 1960s, at a time when very little was understood about the disease and families affected by HD often faced tremendous stigma and isolation. That diagnosis would profoundly shape both of their lives—but in very different and equally important ways.  Dr. Nancy Wexler is a pioneering geneticist and one of the most influential figures in the history of Huntington’s disease research. She played a central role in the international research effort in Venezuela that ultimately helped scientists locate the Huntington’s disease gene on chromosome 4, paving the way for the identification of the gene itself in 1993. She has spent decades advancing HD research, advocating for families, and helping transform our understanding of the disease.  Dr. Alice Wexler is a historian, author, and scholar whose work has explored the human side of that same scientific story—the history of Huntington’s disease, the experiences of families living with genetic risk, and the complicated questions surrounding predictive testing, identity, stigma, and inheritance. She is the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research and The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease.  Together, Nancy and Alice offer something truly unique: two perspectives on the same family history—one that helped change the course of Huntington’s disease science and, at the same time, tells a deeply human story about what it means to live in the shadow of an inherited disease.  You can purchase Nancy's book here: https://hdfoundation.org/nancy-wexler-memoir/

Social Worker Spotlight with Jamie Holloway Traveling Tips & Tricks Host: Katrina Hamel #HuntingtonsDisease #HD #SocialWorkerSpotlight #Help4HD #Help4HDLive #Travel

Please visit hdreach.org to sign up for the first Crafting Corner meeting on August 19th at 7 pm

How are Huntington's disease clinics doing when it comes to the patient experience? On this episode of Help 4 HD Live, I'm joined by Sarina Smith of HD-PACE to share an update on our Clinical Patient Experience Survey—and we need your help! We're incredibly close to reaching 100 responses from people across the U.S. HD community. Every response helps us better understand what's working, where improvements are needed, and how we can use real patient experiences to advocate for better care. If you've been seen at any HD clinic in the United States or you are a support person who takes a loved one to an HD clinic, your voice matters.🎧 Please visit hdpace.org for more information! You can also access the survey here.

Today, Roche announced they will be ending two of their programs for #HuntingtonsDisease. Dr. Rachel Harding of HDBuzz will be joining Lauren to talk about this and what it means for the HD community.

For years, we've talked about clinical trials, FDA meetings, setbacks, and progress. Today, we're talking about something many of us have dreamed about for a long time: What happens if AMT-130 gets approved? Approval wouldn't answer every question, and it wouldn't solve every challenge. But it would represent something our community has waited decades for—the possibility of having a disease-modifying treatment for Huntington's disease. On today's Help 4 HD Live, Jeremy Renz and I are taking a realistic look at what could happen next. We'll discuss what approval could mean, what hurdles would still remain, and what patients and families might expect moving forward.💙 #HuntingtonsDisease #AMT130 #GeneTherapy #Help4HDLive #TimeMatters #DelayStealsTime

In this episode, hear Christina DeGryse and Karl Miran speak at the Public Hearing of Commissioner’s National Priority Voucher (CNPV) Pilot Program. Right now, you can leave a comment about this program until June 29th. Here is the link

For the next few weeks, we are going to talk about advocacy efforts going on everywhere. This week, we have HDYou Community Stories from HDYO. Dina and Sarina share what advocacy efforts are happening globally.

Cheryl Turner joins Lauren to talk about movement symptoms in Huntington's Disease and what has been helpful in managing them in her husband.

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